I started this Blog after being diagnosed with Prostate Cancer in 2010. It was a way of keeping family and friends informed. It then became a campaigning tool helping to make improvements in hospitals nationally. In 2013 we moved to Johannesburg, setting up our own e-education company. Now we have moved to Bangkok, a great base to explore SE Asia. After surgery 7 years ago my PSA remains at zero, the cancer is still undetectable, and I remain thankful.

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Saturday, 30 July 2011

Yesterdays meeting with members of the NHS Trust went ahead as planned. I met up with Jim, the Chairman of the local support group, and we talked over our aims before the meeting. Did we achieve them? Probably not, but we did make progress in building some trust and at least we have now opened a dialogue. But this had been done before last October and we let it string out until there was no string left! This time, now that the ball is rolling and we are talking to different people, we need to make sure that we reach a quick conclusion, in weeks rather than months.

After both sides had made their positions clear, and there was a very frank and open discussion, we all agreed on the next steps. The Head of Urology has looked in detail at my proposed action plan. He has commented on it in an e-mail to the Head of Governance, who will now redraw the action plan and pass it back to me for consideration this coming week.

If I agree to the finished article then it will be implemented and some of the suggestions may be taken up by the Prostate Cancer Charity, who I hope will try and bring some standard practice in throughout the countries hospitals. At the meeting, the Head of Urology pointed out that many of the suggestions had already become practice within the unit. He also said that the diagnosis of Prostate Cancer only started to take place at the Carlisle Hospital 2 years ago and that great strides had been made to improve the service even since I was diagnosed a year ago.

This, along with a public apology would satisfy all of my immediate goals.

We then still have the problem of the local imbalance of what the NHS Trust spend on medical treatment compared to what is spent on PR and legal fees. The NHS nationally have been asked to make savings of £20 Billion this year, to help pay for bankers bonuses and for the cruise missiles that we are raining down on Libya, amongst a vast amount of other bloody needless projects. We must make sure that the money we have left to spend locally is spent on nurses and not solicitors!

Throughout the past year I have learnt a lot about the public in England. The vast amount of people are not willing to do anything, regardless of what is done to them. I genuinely believe that if the North Cumbria NHS Trust had turned the Cumberland Infirmary into a greyhound stadium, and issued all households with a first aid kit, apart from my small army of 'diehards', nobody would have even complained!

Am I right?

I will update you this coming week and again, thank you for your continued support.

On reading this article in the Telegraph this morning, perhaps you can see what we are up against. Whilst billions of pounds are put aside to bail out the banking system and to continue to pay their massive bonuses, our NHS patients are deliberately being left to die? YES! My operation cost £20,000. If it had been delayed by another few months (I waited 4 months in Carlisle) and spread, the cost to the NHS would have been about £150 a year in tablets to control the disease, or if I could have afforded to go privately then it would have cost them nothing. The big WIN for the Government is when you die! Then not only do you cost them nothing more in health bills, your family pay to bury you, the government collect the inheritance tax and you don't get any more pension payments. Win, win, win & win!!!!

As a country, we can afford to launch missiles on Libya at £500,000 a time, and the cost of a single Tornado sortie, £30,000 on fuel alone, whether it attacks or not. When are the public in this country going to wake up and smell the accountants? Our doctors and nurses haven't got a hope of carrying out their duties; like us they are puppets in a game where, apart from the wealthy, we all lose.

Thursday, 28 July 2011

Tomorrow I have a meeting with officials from the local NHS Trust. It is a meeting that I hope will help to improve the patient pathway for newly diagnosed Prostate Cancer patients at the Cumberland Infirmary. As I have a meeting in Preston on Wednesday, with the CEO of the Prostate Cancer Charity Owen Sharp, I am hoping that ultimately it will be an action plan that can be used to give guidelines to hospitals throughout the UK.

We must try and discover why the local NHS Trust quote that 95% of patients who are treated in Urology are happy with their care, and yet when Helen Kelly visited our support group, the figure was just 4%!!!

This is the action plan that would have satisfied me and other members of the local support group, had it been presented to us earlier this year…

1.A notice will be displayed at reception stating that; ‘You will be sent a copy of all correspondence sent to your GP regarding your treatment, unless you specifically ask us not to send it to you.'

By doing this, it cuts out the possibility of the staff forgetting to ask the patient, and from feedback given at our support group, all our members would want to be kept informed.

2.Mr Bashir apologised for not replying to Mr Sencier’s polite letter of grave concern. He explained that it was an oversight due to the pressure of his workload. He also apologised for not keeping Mr Sencier adequately informed about the progress of his case, causing unnecessary worry and concern.

When mistakes happen, a simple apology is usually enough, and this should become common practice at all levels.

3.We are sorry that your records and scans were not available at your MDT meeting, and that nobody who was at that meeting was available to you, when you came for the feedback. We know why this happened and systems have been put in place to ensure that it cannot happen in the future.

Again, a simple apology and assurance would have been nice!

4.Dr Sidek apologised for not introducing herself as the ‘Oncologist’ at your appointment. She now understands that a newly diagnosed cancer patient, on their first visit to the Radiology Department may need some guidance. This is now standard practice for all new patients.

Another apology and an explanation.

5.After the complete failure of the PALS service in your case, a radical shake up has taken place, which includes closer monitoring and ‘mystery caller’ testing.

Why is PALS not tested for efficiency by ‘mystery callers’? It’s a vital service for when things go wrong and it should be tested.

6.We are sorry that nobody at the hospital ever replied to an e-mail that you sent, but at the hospital we cannot reply to e-mails due to ‘unsecure networks’. We are also sorry that e-mail addresses are available to patients at the hospital because this does give the impression that they can use this as a form of communication. We also acknowledge that it would be a good idea to have an automated system which, when a patient does e-mail the hospital, a message is sent to them stating that ‘we can not reply’, rather than them thinking that someone is actually dealing with it!

This is 2011 and most hospitals in the country, and back street newsagents have e-mail. It goes a bit beyond belief that we have this system of confusion at Carlisle where patients can e-mail the hospital but cannot receive a reply, even to say that ‘we can’t reply’!

7.We are sorry that you had to throw away the ‘help number’ that you were given, and now realise that the system we had in place was completely inadequate for purpose. There is now a modern voicemail system that can take almost unlimited messages. Also, realising the importance of ‘information’, especially in newly diagnosed cases, a very strict ‘pick up and answer’ system is now in place. We have backed this up by providing a list of other useful numbers in a simple easy to understand format. This not only includes your Consultant’s secretary & Urology Nurses, but also The Prostate Cancer Charity, Macmillan, The Local Support Group, PALS and as a last resort, if you think that the system is failing you, the Head of Governance.

Had I been able to talk to the Head of Governance or even knew of their existence, I could have contacted them when both my Consultant and PALS both failed to reply to me.

8.Helen Kelly attended the local support group meeting on 1st February. She wasn’t too surprised to get a friendly but ‘hostile’ reception from the 25 members present because she had been invited knowing that there were problems. Only one member present was happy with his ‘patient pathway’, so we realise that there is a serious problem. She has promised to feedback your concerns to the appropriate departments at the hospital and will send you a detailed account of her proposed actions.

In reality, it was a meeting for the sake of a meeting with no feedback ever given. What did she learn? Who did she feedback to? When & with what results?

I would again like to thank the hundreds of NHS staff, patients and members of the public for the relentless support I have received throughout this difficult time. Like you all, I just want a better hospital.

Someone asked if I was going to request a public appology tomorrow.

It would be nice, however I would be very suprised if it happened. To do that, someone at the NHS Trust would first have to realise that they just might have been wrong in some way. That I wasn't some lunatic who just decided to make a load of placards and spend 2 hours marching up and down outside the hospital because nothing was wrong! It takes a very strong, well managed organisation to realise it's own shortcomings, and I think that the North Cumbria NHS Trust still see me as a 'problem', that they just want to bury!

Thursday, 21 July 2011

Yesterday was eventful! All the previous night I had been having a strange feeling in my chest. It was as though my heart was racing but not at a steady beat! When I woke up in the morning the problem was still there and I was feeling a bit light headed. I couldn't check my blood pressure, the machine just couldn't cope with what was going on; there was a samba band inside me!

I called my doctors for advice at 8.30am. Normally it takes a week to get an appointment, but 30 minutes later I was stood in front of her, a lovely person who sure didn't look old enough to be a doctor :-) but knew exactly what she was talking about.

She sent me to the nurse for an ECG and then 2 minutes later I was back with the doctor. My pulse was 140 and it was so erratic that the graph could have been a Lake District map. She said, "we need to get you to hospital". At that, I think my heart beat jumped another 20!

Within 30 minutes I was in the Carlisle Cumberland Infirmary! I thought, as I went into the building, thank God I've never criticised the doctors or nurses here on my Blog, just the under resourced system that they have to work in. But then hell, do they know that or have they just listened to the sound bites on radio and TV?

A lovely doctor called Jackie looked after me and I can't give my experience any less than 100% yesterday. I had my heart, liver and kidney functions tested and all sorts of other tests that I pretended to understand, and after over 9 hours and having seen a consultant, they let me go home. I have to go back for a heart scan as an outpatient, but all signs are that this will be routine.

After all that's happened in the past year between me and the hospital, it would have been very unfair of me not to Blog this experience, because the mass of people, like Jackie, are doing their best for us 24/7 and they are wonderful people.

Beverley of course was as good as she always is and no praise is high enough for her. xxx

Friday, 15 July 2011

Hundreds of you follow this Blog on a daily basis and thousands every week. As you all know, I have a meeting with some members of the North Cumbria NHS Trust on Friday 29th July. I am going with another cancer patient from my support group, and we will do our best to get an outcome that will benefit all of you and your families in the future.

However, it would be great if there was someone out there with a legal or relevant medical background who could come along to support us. If you are that person or know of someone who might be able to help, could you please e-mail me on dansencier@yahoo.co.uk

A BIG thank you to the group of people who have volunteered for the next demonstration, and hopefully it will not need to go ahead. I will contact you all by e-mail with details.

However, these figures do not include the amount paid by the North’s biggest trust, Newcastle Hospitals NHS Foundation Trust, who refused to reveal their agency costs – despite being legally obliged to tell us under a Freedom of Information request made at the start of December.

The revelation comes just days after the Government announced an NHS shake-up which could lead to nearly 25,000 jobs axed in the UK as the coalition attempts to claw back some of the health sector’s huge debt.

All North trusts have come under fire from the region’s leading union chief, who slammed the trusts for being “irresponsible” with public money.

Trevor Johnson, Unison’s lead officer for health in the North East, said: “There is a direct link between the amount of money paid to agency staff and the amount of permanent jobs which will go.

“It costs approximately twice as much to employ an agency worker as it does to employ a contracted worker, so I don’t know why these trusts persist on doing it.

“The trusts have know about this problem for years but have failed to do anything with this knowledge. They are well aware how much it is costing them but they may feel it is too complex to deal with it.”

Of the six trusts who responded, North Cumbria paid most to temporary staff – a whopping £9.4m – including more than £4.5m for consultants.

Wednesday, 13 July 2011

A lot has happened today but having a tooth extracted was not the best part...ouch! I can tell you, Scotch eggs are BAD for you and this one was from Cranston's! I doubt whatever I bit into came from a chicken or a pig, more likely a quarry!

Channel 4 news have been in touch today and it's back on the BBC Radio Cumbria morning show this coming Monday.

My favourite message sent today, I've copied in below. It's worrying because that is exactly how I feel. You can't help how you, feel can you? It's an amalgamation of feelings all rolled into one, based on your life experiences. What do you think...

"Be careful with the poker players you will meet on Friday 29th. Their ties, Rolex watches, seriously concerned expressions and caring smiles mean little. Their one aim is to get back to their normal salaried lifestyle and consign you to history. They will try very hard to send you away with just a lucky bag of empty promises, and they have a lot of experience in doing just that. You have done them a lot of damage and they will still see YOU as the problem, NOT their own shortcomings".

Tuesday, 12 July 2011

Latest news.... I have a meeting with representatives of the North Cumbria NHS Trust on Friday 29th July. I have sent them my own 'suggested action plan' ahead of this meeting. As you may remember, their original action plan was considered inadequate by both myself and the majority of other members of the North Cumbria Prostate Cancer Support Group. They had taken 7 months to produce their original plan and it was because of lack of progress that we decided to demonstrate outside the Cumberland Royal Infirmary last Monday. I hope that progress can be made at this meeting to ensure a better experience for all newly diagnosed prostate cancer patients at this hospital.

I have also heard from the CEO of the Prostate Cancer Charity who is very keen to set up a meeting before the month end with myself and others who are actively campaigning on behalf of men with prostate cancer throughout the UK. Thank you for sticking with us everyone!

Saturday, 9 July 2011

Our little bit is at the ten and a half minute point. About 15 hours of filming to get 5 minutes, but I think it's put together well. It will have certainly raised Prostate Cancer awareness across the country and if you know of any man who doesn't know what his last PSA test result was, or even what PSA is, then now is the time to take action. On the top page of this Blog, underneath the protest picture, there is a link to the Prostate Cancer Charity, where you will find a wealth of information.

Friday, 8 July 2011

I cut these two articles out of The Cumberland News this morning. This is what I have been saying all along and the local NHS Trust has tried to belittle my comments by trying to convince the public, even on local TV this week that they were one of the "best hospitals in the country". That's what they said!!! Well if that's the best then please never send me to the worst!

Thursday, 7 July 2011

Just had a call from the BBC's 'The One Show' in London. Because of the story concerning the closure of 'The News of the World', they MIGHT be dropping my story tonight. They said that it is a good film and will probably run it on Friday or Monday instead. I'm obviously disappointed because I have told everyone I know, and some who I can't get in touch with. I will keep you all informed.

Wednesday, 6 July 2011

Because this Blog is getting thousands of hits and I am getting e-mails, phone calls and texts faster than I can cope with them, I thought it would be worth saying this.....

If I haven't replied or acknowledged you in some way, it's not because I am not grateful or I don't care. I do. I am grateful and thankful to every person out there who has flooded me with a wave of support that I am still sitting on wondering where it will break!!! Thank you.

Some of you are new to the Blog and have not been with the story from day one. Many of you have comented on the nurses and medical staff at the hospital in a way that you probably think supports my feelings. So I would like to make the following points that have been mentioned in the earlier days of the Blog, but worth saying again.

Mr Eronini is head of Urology and was the person who spoke to the press on Monday evening. Last summer, when he returned from holiday, the very first thing he did that day was to refer me to Addenbrookes in Cambridge at my doctor's request. I remain very grateful for his prompt actions that day. He was not the Consultant responsible for my care, and my care was only transferred to him on the day he referred me.

I do not blame the Urology Nurses at this hospital for anything. They are under resourced and did there best at all times to keep up with a sometimes impossible workload. At Addenbrookes there are receptionists, secretaries, councillors, urology nurses, tea makers and cleaners. At Carlisle, the Urology nurse does all of this!

I have also been a patient at the hospital in the past, not related to Cancer, and found everyone that I have come into contact with, very helpful and professional. I do believe that we have the core staff to make a really good hospital.

I have forgiven my original consultant who left me drifting in the system for about 4 months, not even replying to my polite letter of concern. Maybe he had problems of his own, maybe he was overworked, I don't know, it's in the past now.

PALS is the unit at the hospital, the safety net for when things go wrong. I forgive them for not answering my letters, e mails and phone calls. A person who works for the PALS office in another hospital, told me that some days, it gets so bad that we put the voice mail on, because we can't stand being shouted at anymore. What a terrible job!

BUT, we have a body of people, I don't even know how many there are, called the 'NHS Trust'. Is their job to manage the hospital? Do they get paid very well? Do they decide how money is spent at the hospital? I guess the answer is, yes, yes and yes! These are the people who I have the problem with. When they decided to send me a letter from their solicitors, threatening me with legal action, when all I wanted to do was talk about ways of improving OUR local hospital, they crossed the line. They decided that day how to spend the hospital's money!

Ohhhh what a day, not sure if I'll ever forget it! It all started when Patrick from 'Civility' arrived last night, what a great guy. We talked over plans for today before both getting a fairly early night.

We were up nice and early to greet Simon Lord who had travelled all the way from Leicester and slept in a lay-by all night. Well, inside his car in a lay-by! Simon is a great character, absolutely nuts and full of beans. Well he was after Patrick had cooked a great breakfast.

Then 'The One Show' team arrived and filmed us getting ready, packing the car with placards and we all finally set off for Carlisle. The Police had given me a number to call if we needed help at anytime, but I was confident that all would go well.

When we arrived at about 1145, there were so many media there that they outnumbered protesters, but what a lovely atmosphere on a beautiful sunny Cumbrian morning, it felt so good. We unloaded the placards and banners along with plenty of drinking water. The last thing I needed was to become dehydrated and be admitted to the hospital!!!

Media present were...

The BBC's 'The One Show', which will be going out on Friday night at 7pm.ITV Borders LookaroundBBC Look NorthRadio CumbriaThe Cumberland NewsThe News & Star

Those Demonstrators present, and I love you all...

Sue, who made up the excellent handouts.Simon her husband who protested better than any student I've ever known!Kyle, who came all the way from Harrogate with placard and 'riot' T shirt.Dave from our local support group.Simon all the way from Oxford :-) and what a dynamo!Rob, great guy, my mate from Uni.Patrick from Brighton representing 'Civility'.Red Russ and Michele, lovely people :-)!Pat, Eddy's wife who gave a great interview.Janet, all the way from Bingley.Denise, my Uni great buddy from last year.Eddy, another great guy from our support group.

Hope I haven't missed anyone! I'm going to e-mail you all over the next few days just to thank you again, you should all be so proud of yourselves. It's easy to offer support, wish me well, say you'll be there in spirit, and I really do appreciate that, the whole thing would never have been possible without you. I got so many texts and phone calls of support and I just couldn't reply because so much was going on. But let us recognise these people as the 'foot soldiers', the ones who got out of bed and travelled to stand by my side in Carlisle this morning. You are very special people and I would support you if you needed me.

I have already seen the local TV and it looks great. It's also made local radio on every bulletin. For those of you out of the area I will put links to the TV on this Blog as soon as it comes up, probably tomorrow.

Today we raised awareness of Prostate Cancer, a disease that kills 11,000 men a year in the UK.

Today we made our local NHS Trust think hard about how they should communicate.

Today we also made sure that newly diagnosed Prostate Cancer patients at the Cumberland Infirmary will be better supported in the years to come. And thanks to the BBC's 'The One Show', the message will reach every home in the country this week. WHAT A RESULT!!!!

Sunday, 3 July 2011

Sorry for not updating the Blog as much as I would have liked to over the past week, but I have had very little time. I have had to keep communication going with the people who are actually going to stand beside me tomorrow outside the Carlisle Cumberland Infirmary, and doing that via the Blog would not have been a good idea for obvious reasons.

On Friday I was filming all day, about 9 hours with BBC's 'The One Show'. We went to Martindale for most of the interview stuff and then over to the other side of Lake Ullswater at Leeming House. We then filmed back at home and for a 'Media Student' it was an amazing experience and I would like to thank Colin (Cameraman) Liz (Producer) and Joel (Presenter) for being such fantastic people to be around.

When I got home there were messages on my phone from ITV Border Television, BBC Look North, Radio 5 Live, Radio Cumbria and the local paper. Starting to get a bit overwhelming!

BUT the biggest surprise was the message on my phone from one of the Directors of the NHS Trust offering 'talks'. Why? Well last week and for the past months not a soul would speak to me or the press, we just got 'no coment' every time. I even got a letter from the Trust's solicitors threatening legal action if I stepped out of line, and telling me that my Blog was being monitored.

So what's changed since last week? 3 things!

1. Both of our local MP's, John Stevenson and Rory Stewart have been fully behind me. Rory Stewart could not believe that this situation was handled the way it was, threatening a cancer patient with legal action to try and shut him up for wanting to improve his hospital. I still can't come to terms with it. Had the same situation occurred with a National Supermarket, they would have had it sorted the next day.

2. The protest outside the hospital wasn't a big deal for the NHS Trust at first, they could let it pass by and stick to 'no coment' because that had always worked for them before. But now it was being covered by 3 TV stations, one of those being BBC's 'The One Show'.

3. To feature the whole story on BBC's 'The One Show' at 7pm one evening this coming week, was the absolute ace for our campaign, without which the Trust could have continued to say 'no coment' and get away with it.

So, the North Cumbria University Hospitals NHS Trust wanted to talk...Should we call off the Demo?

This was suggested to me in a phone call from the Police while I was enjoying the Skelton Show yesterday. They said that the Trust had asked them, to ask me if now that they had agreed to open talks, would I consider calling off the demonstration planned for Monday.

I felt very angry, because all I have ever wanted was to talk about some simple low cast improvements at our hospital, but they would not listen, even after a 7 month attempt at an action plan for change which was deemed weak by our local support group. Helen Kelly from the NHS Trust, came to a North Cumbria Prostate Cancer Support Group meeting (I am the Treasurer), and was told by only 1 out of the 25 Prostate Cancer Sufferers in the room that he had been happy with his overall experience. Nothing happened as a result!

After an exchange of calls between myself, The Trust and the Police, I told the Police that we would limit the amount of protesters to less than 12. This was to allay the fears of the Trust that too many people demonstrating at the entrance of the hospital could cause a problem with access for ambulances and other patients.

So the Demo goes on, but only show up if you have contacted me first because I don't want to break our side of the deal and go over on numbers.